The last 40 years has not only seen a dramatic increase in the survival of most childhood cancers but a great amount has been learned about the potential adverse late effects of the powerful therapies that have lead to cures for so many children. Although much work remains to be done to better apply the knowledge-as extensively reviewed in this book—gained about late effects to specific childhood cancer survivors, an additional and just as critical element of ensuring that childhood cancer survivors receive ideal follow-up care is learning and overcoming the disparities and barriers to accessing quality late effects care. In this chapter we have reviewed these disparities and barriers using the IOM model of barriers to quality care in the general population (Sect. 29.1) and Oeffinger’s model of optimal healthcare for pediatric cancer survivors (Sect. 29.2) [5]. Both models divide factors that either facilitate or impede optimum access into long-term care into survivor-related, physician-related and health systems-related categories.

Survivor related factors include issues specific to an individual’s cancer experience but also factors independent of having cancer, such as gender, culture, and education, though in some cases they could be influenced by the cancer experience. In terms of general individual barriers to accessing quality care, little work has been done to investigate these specifically in the childhood cancer survivor population; therefore, the majority of data related to race/ethnicity, culture, and language comes from the general adult literature on barriers and disparities in access to care, including research on primary and secondary cancer screening. This is in contrast to survivor-specific and provider-related domains where the literature in children on survivorship is more advanced than in adults. Nevertheless, even in these areas, there exists the limitation that much of the work on barriers to care is derived from single, albeit high-quality cohort study, the CCSS, which was not designed to look at barriers per se, but this is the study which helped solidify the argument that childhood cancer survivors need specific risk-based follow-up.

Given that one large study dominates our understanding of barriers and disparities in accessing quality childhood cancer survivorship care, evaluating these barriers in independent samples would be helpful. Nevertheless, we believe enough is known about disparities and barriers to accessing appropriate health care through a combination of the general literature, the children with special health care needs literature, and, the childhood cancer survivor literature. Therefore it is not too early to begin investigating possible interventions to improve access to appropriate survivorship care, ideally through randomized trials. Potential interventions could be targeted at individual related factors, such as providing culturally sensitive information, or physician-related issues, such as which type of providers are best at delivering risk-based care or tradeoffs that exist between providing short versus more comprehensive treatment summaries and late effects care plans. Interventions could also target health-systems related questions, such as whether eliminating co-pays for certain tests improves the rate at which survivors receive the test. The rates at which current, expert consensus-based guidelines are adhered to could be used as outcomes for such intervention studies, as these represent current best practice recommendations. Finally, survivors, their families, and health care workers should advocate for policies, laws, and funding that help ensure that all survivors have access to appropriate follow-up care. Advocacy should include lobbying lawmakers at all levels, insisting that health insurance providers cover appropriate follow-up with trained professionals. While the Patient Protection and Affordable Care Act (PPACA) holds great promise in reducing barriers to accessing appropriate health care for all and particularly childhood cancer survivors, pressure must be kept up to ensure that it is fully enforced and fully funded. Furthermore, even if fully implemented, PPACA will not eliminate all barriers as it does not necessarily address issues specific to childhood cancer survivors. Survivors must therefore remain alert and proactive about how health care reform can be expanded to improve their access to appropriate care. Advocacy groups such as the American Childhood Cancer Organization and the National Coalition for Cancer Survivors can assist individuals with specific issues and by bringing together survivors into groups that can provide a more effective voice than one individual alone.